So sorry for the lack of updates. We have been busy, to say the least.
We are now officially back in Philadelphia! Both born and raised in Philly, Val and I had been in the burbs for 8 years or so. Most of our family is still in Philly, as is CHOP, as is Val's work. It made sense that we should come back, so we sold our house and now are back to being city mice. Due to a very last minute screw up with our mortgage on our new condo, we are squatting in Val's parents' house for a week before our settlement happens this Friday. I will say that the one week reprieve between packing up and unpacking is much appreciated. For the first time in months I don't feel extremely rushed or panicked about needing to do something (aka, packing up the house). Getting the house ready for settlement (while caring for a clingy, medically needy toddler) was just as hard as I thought it would be.Thankfully, it's over now. Originally apprehensive about moving back to the city, now that I am here, it feels like it absolutely was the right decision. I am looking forward to making our new condo "home".
As for Samantha, she is doing great! She's walking better than she ever has. She's talking up a storm. She's 30 lbs now (she was 22 lbs in February) and we've needed to cut back her tube feedings. In fact, she's eating so much by mouth that I wonder if at some point we will need to greatly reduce the tube feedings. Sam is off of the vent all of her waking hours. And, we got permission from her pulmo last week to try a nap or two without the vent to see how she does. Val and I are nervous about doing too much too soon during this time of transition for us. However, once we are settled into the condo we will definitely try to see how she does off of the vent while sleeping. At this point the pulmo isn't even sure she needs the vent at all.
She's come such a long way in just a short amount of time. It's been amazing. The more she improves, the more I am convinced that the study drug has something to do with it. I still plan on taking things one day at a time, but this has been such a wonderful thing to watch. My sweet, smiling girl is having a great time right now and every day with her is such a gift.
In short, we are back home, and we have our girl back to herself and then some. What more could a family ask for?
Until next time,
Monica
Tuesday, June 21, 2011
Friday, May 13, 2011
Home two weeks
Time flies when you are having fun. Well, really, time flies when you are crazy busy adjusting to life with a child with a g-tube, trach, vent and 24 hour nursing. As of this very moment, we are down to 16 hours a day nursing. Which means our house is currently nurse free for the first time in two weeks. Don't get me wrong, the nurses have been absolutely wonderful. We have been very happy with everyone the agency has sent. And, we haven't had one missing hour in the last two weeks. It was just a new experience for us to be with someone in our home 24 hours a day.
Along with being back home, we are planning a move, and Samantha turned three. In addition to a kick-ass birthday party she had this past weekend, I also have had to coordinate changing her therapies from the early intervention program to the IU. And, then in six weeks we'll get to change to a different county!
Despite all of the craziness, all three of us are really glad to be home, and Samantha continues to do so well.
We were back at CHOP yesterday for a variety of tests she needed as part of the clinical trial she is in. I haven't talked much here about the clinical trial as I haven't quite known what to say. We are so very grateful that Samantha was able to begin to receive the study drug (EPI-743) in February. We feel there has been much improvement during the time she has been on the drug. As there were a few things added at once (g-tube, trach, and the drug), it is hard to say what is helping the most. But, we all do believe the drug has been part of what allowed Samantha to have such a turn around after her respiratory failure. Prior to her hospital stay Samantha had irregular breathing patterns (consistently for at least a month, 24 hours a day). Now, even when she is off of the vent for hours, I no longer see those strange breathing patterns. And, she no longer "zones out" as she had been doing. So yes, I think the drug is helping along with everything else. Again, I am so very grateful Samantha is able to receive this drug and hope she can continue to receive it.
However, there are many children with Leigh's who may also benefit from the drug but are not able to receive it because they don't have a genetic "marker" found yet that proves they have the disease. (It's an FDA rule that the drug can only be trailed in children with genetic "proof" of their disease.) I can't imagine the frustration and anger the parents of those children must feel. I know of one little girl diagnosed with Leigh's whose parents tried to get an exception to the rule--and the FDA refused to grant an exception. The little girl, not yet even two years old, passed away in January. The rule needs to change. Period. What harm would it have done to her to allow her to trial the drug? Now, her parents, the FDA and the company that makes the drug will never be able to know if the drug could have helped her. Perhaps saved her?
Despite the current FDA rules, my hope is that Samantha trialing the drug will be a part of something that will push mitochondrial disease treatment even further ahead. And, that is so desperately needed.
Until next time,
Monica
Friday, April 29, 2011
Home Sweet Home
Sorry about the cliche post title, but I just had to do it. Yes, we are home! We arrived home yesterday morning after our very first ambulance ride. Luckily, the lights did not need to be on for the trip.
Samantha is very, VERY excited to be home. She has been moving around more than she has in months (even pre-hospital admission). So far, she seems to be handling the nursing situation ok. Strangely, the home nurses are doing more than we were letting the CHOP nurses do (meds/feeds etc). Val and I really wanted to make sure we were able to do everything relating to Samantha's care before we were discharged, and so we did the majority of her care towards the end of our stay. But, within the last day or so we've had to organize a hospital's worth of supplies in our house and also unpack three months worth of things that we accumulated at the hospital. Needless to say, we have been busy. Really busy. I am so grateful when I hear the nurse say, "Oh, it's six o'clock, time for her feed. I'll get it." In addition, Val and I were able to take a trip to Target (to buy things to store all of Sam's supplies) all by ourselves today.
Now that we are home, we need to start packing. We were able to sell our house and will be buying a one floor condo in the city. We will be moving mid-June, so we have lots to do between now and then. We are all very happy that we will be so close to Val's work, family, and CHOP.
I know my recent posts have been brief, but as I mentioned earlier we have been oh so busy, but I did want to update and let everyone know we were home. Thank you so much for all of your kind words, support and prayers. We are also very grateful to the Progressive Care Unit at CHOP who were so amazing with our sweetie.
Until next time,
Monica
Samantha is very, VERY excited to be home. She has been moving around more than she has in months (even pre-hospital admission). So far, she seems to be handling the nursing situation ok. Strangely, the home nurses are doing more than we were letting the CHOP nurses do (meds/feeds etc). Val and I really wanted to make sure we were able to do everything relating to Samantha's care before we were discharged, and so we did the majority of her care towards the end of our stay. But, within the last day or so we've had to organize a hospital's worth of supplies in our house and also unpack three months worth of things that we accumulated at the hospital. Needless to say, we have been busy. Really busy. I am so grateful when I hear the nurse say, "Oh, it's six o'clock, time for her feed. I'll get it." In addition, Val and I were able to take a trip to Target (to buy things to store all of Sam's supplies) all by ourselves today.
Now that we are home, we need to start packing. We were able to sell our house and will be buying a one floor condo in the city. We will be moving mid-June, so we have lots to do between now and then. We are all very happy that we will be so close to Val's work, family, and CHOP.
I know my recent posts have been brief, but as I mentioned earlier we have been oh so busy, but I did want to update and let everyone know we were home. Thank you so much for all of your kind words, support and prayers. We are also very grateful to the Progressive Care Unit at CHOP who were so amazing with our sweetie.
Until next time,
Monica
Wednesday, April 27, 2011
Fingers Crossed, home tomorrow!
Our 24 hour stay went well, and we had our discharge meeting yesterday. As she is doing so much better, we brought Samantha to her own discharge meeting. I think it may have been the first time that happened on this floor. Samantha handled the hour long meeting very well, and enjoyed sitting with all of the grown ups.
Barring any last minute complications, we should be home tomorrow morning.
At home waiting for us is all of Samantha's new equipment--feeding pump, ventilators, heaters, suction machines, etc, nurses and so forth. We will now be a hospital away from home, and we will be thrilled to be there.
It is really hard to put into words what these last few months have felt like for us. It has been quite the roller coaster, to say the least.
Right now, Samantha is doing amazingly well. She is, dare I say, better than she was prior to admission. And for that we are so, so very grateful. We aren't sure how long she will need the vent for, or if her need will increase. Or perhaps a little of both. As usual we will take it one day at a time with our little sweetie, and enjoy every minute.
We are very thankful for all of our family and friends who have made this admission go as smoothly as it could. We love you all.
Until next time,
Monica
Barring any last minute complications, we should be home tomorrow morning.
At home waiting for us is all of Samantha's new equipment--feeding pump, ventilators, heaters, suction machines, etc, nurses and so forth. We will now be a hospital away from home, and we will be thrilled to be there.
It is really hard to put into words what these last few months have felt like for us. It has been quite the roller coaster, to say the least.
Right now, Samantha is doing amazingly well. She is, dare I say, better than she was prior to admission. And for that we are so, so very grateful. We aren't sure how long she will need the vent for, or if her need will increase. Or perhaps a little of both. As usual we will take it one day at a time with our little sweetie, and enjoy every minute.
We are very thankful for all of our family and friends who have made this admission go as smoothly as it could. We love you all.
Until next time,
Monica
Friday, April 22, 2011
GI troubles and a 24 hour stay
Samantha had a good week with the exception of some GI issues. She may have some sort of GI bug in her little body. It started with some vomiting and a low fever a few days ago. And now the vomiting is less, but now the other end is having a bit of extra traffic (sorry for TMI!). Ironically, she had some stellar blood work drawn yesterday. Her BUN, sodium and bicarb were all in normal range, and her lactate was 1.8 (also normal, Samantha's is usually high). Perhaps vomiting suits her? We had the nurses send some stool to get cultured last night just to see what comes back. Through it all, Sam's personality is in tact and she continues to laugh and play. The kid is a champ.
The cardio team came by this week and diagnosed Samantha with Wolf Parkinson White Syndrome. Due to this new diagnosis, they switched her calcium channel blocker to a beta blocker, as the calcium channel blocker is not something you should be taking if you have WPW. Now, she is on propranolol for her autonomic issues. We aren't 100% sure she still needs something like propranolol as her autonomic issues may have been related to her respiratory crisis two months ago. However, at this time we would rather play it safe and so far it seems to have lowered her sometimes high heart rate a bit. For right now there is nothing to do for her WPW as she does not have any symptoms. It is just something to keep an eye on and if any symptoms arise we will deal with it then.
Our 24 hour stay is scheduled to begin this afternoon. That means for 24 hours Val and I will take over ALL of Samantha's care here, to include a trach change and vent circuit change. As we are here all of the time anyway, we are assuming all will go well. As I mentioned earlier, Sam is still dealing with the GI issues, so that has me a little concerned. If we were home and all of this was going on we may have taken her in to a doctor or the ER--but we are already here. Apparently if we have questions for the doctors during the 24 hour stay, that is ok. But if we need intervention (such as an IV), we would cancel the 24 hour stay and try again at a later time. Postponing the stay by a day or two is not too big of a worry for me. My bigger concern is our discharge this coming Thursday. I really don't want to delay that if we can avoid it. Hopefully all will go well and we will be home soon as anticipated.
Last night Samantha got a very special treat here in the hospital. Val and I took our trach CPR class on Wednesday morning, which means we are now finally able to take her off of the floor by ourselves. We were in the hall going towards the elevators last night when one of the nurses walks up to us with a big smile on her face. She told Sammy she had a big surprise for her and directed us to the play room. In comes three lovely musicians who serenaded Samantha with Bruno Mars, "Just the way you are". While all of the lyrics didn't quite fit for a toddler, the refrain had Val and I almost in tears.
When I see your face
There's not a thing that I would change
'Cause you're amazing
Just the way you are
And when you smile
The whole world stops and stares for awhile
'Cause girl, you're amazing
Just the way you are
The playroom has glass windows surrounding it, and while Sam was watching her personal concert, all of the nurses on the floor were standing outside with smiles on their faces. It was an incredible moment. And, Samantha loved every second of it. She enjoys music so much, we were thrilled she got to experience something like that.
Until next time,
Monica
The cardio team came by this week and diagnosed Samantha with Wolf Parkinson White Syndrome. Due to this new diagnosis, they switched her calcium channel blocker to a beta blocker, as the calcium channel blocker is not something you should be taking if you have WPW. Now, she is on propranolol for her autonomic issues. We aren't 100% sure she still needs something like propranolol as her autonomic issues may have been related to her respiratory crisis two months ago. However, at this time we would rather play it safe and so far it seems to have lowered her sometimes high heart rate a bit. For right now there is nothing to do for her WPW as she does not have any symptoms. It is just something to keep an eye on and if any symptoms arise we will deal with it then.
Our 24 hour stay is scheduled to begin this afternoon. That means for 24 hours Val and I will take over ALL of Samantha's care here, to include a trach change and vent circuit change. As we are here all of the time anyway, we are assuming all will go well. As I mentioned earlier, Sam is still dealing with the GI issues, so that has me a little concerned. If we were home and all of this was going on we may have taken her in to a doctor or the ER--but we are already here. Apparently if we have questions for the doctors during the 24 hour stay, that is ok. But if we need intervention (such as an IV), we would cancel the 24 hour stay and try again at a later time. Postponing the stay by a day or two is not too big of a worry for me. My bigger concern is our discharge this coming Thursday. I really don't want to delay that if we can avoid it. Hopefully all will go well and we will be home soon as anticipated.
Last night Samantha got a very special treat here in the hospital. Val and I took our trach CPR class on Wednesday morning, which means we are now finally able to take her off of the floor by ourselves. We were in the hall going towards the elevators last night when one of the nurses walks up to us with a big smile on her face. She told Sammy she had a big surprise for her and directed us to the play room. In comes three lovely musicians who serenaded Samantha with Bruno Mars, "Just the way you are". While all of the lyrics didn't quite fit for a toddler, the refrain had Val and I almost in tears.
When I see your face
There's not a thing that I would change
'Cause you're amazing
Just the way you are
And when you smile
The whole world stops and stares for awhile
'Cause girl, you're amazing
Just the way you are
The playroom has glass windows surrounding it, and while Sam was watching her personal concert, all of the nurses on the floor were standing outside with smiles on their faces. It was an incredible moment. And, Samantha loved every second of it. She enjoys music so much, we were thrilled she got to experience something like that.
Until next time,
Monica
Saturday, April 16, 2011
Another fast week....
We had another good week with Sam here in the hospital. We did our 5th trach change on Tuesday in a rush when we suspected she had a bit of mucus stuck in there. We were scheduled to do it at some point in the morning but wound up doing it at 6 AM. Samantha was not happy to be bothered so early in the morning, but our suspicions proved to be true. There was a bit of gunk stuck in there. All was well as soon as we changed the trach. Actually, she was still doing fine with the mostly clogged trach, which shows you just how much she needs it right now (not that much).
Sammy has been off of the vent for up to three hours at a time, two times a day this week. It is really incredible. In addition, she has been upright more and more. Samantha took her first independent steps since this crisis began this week. Her labs seem to have calmed down for now, and she continues to talk up a storm.
There is a new finding that has us a little concerned, but we are hopeful it turns out to be nothing. The attending noticed that Sam's heart lead line looked "different" to him on the monitor, so he ordered an EKG. Samantha has had two previous EKG's during this admission which looked normal (as did her EKG this past summer). The EKG yesterday showed an abnormality in her heartbeat (QRS is long). As Sam is not showing symptoms, there is really nothing to be done right now but keep an eye on it. We will consult with a cardiologist next week. The attending isn't sure if this is just a symptom of her mito that may come and go, or if this is a side effect of one of her meds (he thinks less likely). Again, Sam's doing fine right now, but of course, anything new leaves us just a bit worried--especially when it pertains to her heart. We shall see.
Samantha continues to amaze us with her sweet self, and we should be home in less than a week and a half if all goes well. That makes us all very happy.
Until next time,
Monica
Friday, April 8, 2011
4th trach change for us complete
Val and I did our fourth trach change last night and it went really well, if I do say so myself. We have to do two more and then take a CPR-trach class. Next up will be a 24 hour stay in the hospital where the staff does not help us at all and we do ALL of Sam's care by ourselves (including a trach change, vent circuit change, walk around the hospital etc). After the 24 stay is deemed successful they schedule a discharge meeting and we are then "allowed" to take our girl outta here. Apparently we get to ride in style (ambulance) all the way home.
As I am here all of the time I have been doing the majority of Sam's care anyway, so the 24 hour stay doesn't scare me. What does scare me is trying to figure out how to get everything "ready" at home. In addition, we've had a bunch of showings at the house and a potential offer is coming our way. Trying to buy a new house and moving so close after discharge should be a good time. Lots to do, to say the least.
In other news, Samantha continues to do really well. Her turn around has been nothing short of amazing. I would say she is doing better than prior to her hospital stay in terms of energy and speech. Each day she says longer sentences and is remembering things that happened months ago--odd for even a typical toddler. Heck, odd for me! Sadly, I can't remember what happened yesterday. Samantha still is not where she was in terms of trying to walk (very shaky and can't take independent steps), but I think that is to be expected.
Samantha continues to tolerate her short times off of the vent really well and is on CPAP mode while awake the majority of the time. She no longer has the weird breathing patterns (while off of the vent that I have noticed) that she had prior to the hospital stay. And, she doesn't have those odd "zone out" periods I was noticing prior to the hospital stay.
Sam is doing so well that at times I wonder if we rushed the trach decision. Of course, I probably am forgetting (or more likely trying to forget) just how sick and weak she was just weeks ago. If we didn't trach when we did, we would have had to keep her sedated for even longer and there is no way she would be doing as well as she is right now. Also, it is comforting to have the support of the trach/vent. We can give her the support when she needs it, and allow her time off of the vent when she can tolerate it. If she has a set back we can just adjust her vent settings and not have to worry about intubating/not intubating etc. So really, there was no decision. We had to do the trach, and we did, and it's been so great for her. I think the g-tube has been very beneficial to her as well. She can eat as tolerated, but we have the g-tube as a constant source of nutrition/hydration. There is no more fighting and pleading with her to eat, thankfully. As scary as all of her new "stuff" is, I believe it will give her a better quality of life and lots more energy--so that is a good thing.
Yesterday, Sam tried a Kimba stroller and she really, really liked it. Sammy was off of her vent and the respiratory therapist busted us out of our unit and we took the elevator to the atrium downstairs. She was so excited to be free and was smiling, saying "Hi" and waving at EVERYONE. It was really sweet to see her so excited. Although Sam has been semi-mobile, I always suspected that if she needed a chair of some sort she would be fine with it. The kid loves to be pushed around. And, the Kimba allowed her to be higher up (and sitting up straighter) than her regular stroller. Hopefully we'll be able to get the insurance companies to agree that this type of stroller/wheelchair is what she needs. Although it is heavier than I would prefer, with all of her new equipment it needs to be. We can get it fitted with a vent tray, IV pole and o2 holder. I hope she doesn't need ALL of that stuff all the time. But we will need to take it with us "just in case", so it's good to have the ability to take it with us.
We are still paying attention to some things with Sam's labs, as she is still needing a bicarb supplement (which also doubles as a sodium supplement). But otherwise it's been a good week and we are grateful.
We love the weekends around here because Val gets to be here with us and nothing makes Samantha happier than having both of her mommies around, spoiling her with attention, hugs, and snuggles.
Until next time,
Monica
As I am here all of the time I have been doing the majority of Sam's care anyway, so the 24 hour stay doesn't scare me. What does scare me is trying to figure out how to get everything "ready" at home. In addition, we've had a bunch of showings at the house and a potential offer is coming our way. Trying to buy a new house and moving so close after discharge should be a good time. Lots to do, to say the least.
In other news, Samantha continues to do really well. Her turn around has been nothing short of amazing. I would say she is doing better than prior to her hospital stay in terms of energy and speech. Each day she says longer sentences and is remembering things that happened months ago--odd for even a typical toddler. Heck, odd for me! Sadly, I can't remember what happened yesterday. Samantha still is not where she was in terms of trying to walk (very shaky and can't take independent steps), but I think that is to be expected.
Samantha continues to tolerate her short times off of the vent really well and is on CPAP mode while awake the majority of the time. She no longer has the weird breathing patterns (while off of the vent that I have noticed) that she had prior to the hospital stay. And, she doesn't have those odd "zone out" periods I was noticing prior to the hospital stay.
Sam is doing so well that at times I wonder if we rushed the trach decision. Of course, I probably am forgetting (or more likely trying to forget) just how sick and weak she was just weeks ago. If we didn't trach when we did, we would have had to keep her sedated for even longer and there is no way she would be doing as well as she is right now. Also, it is comforting to have the support of the trach/vent. We can give her the support when she needs it, and allow her time off of the vent when she can tolerate it. If she has a set back we can just adjust her vent settings and not have to worry about intubating/not intubating etc. So really, there was no decision. We had to do the trach, and we did, and it's been so great for her. I think the g-tube has been very beneficial to her as well. She can eat as tolerated, but we have the g-tube as a constant source of nutrition/hydration. There is no more fighting and pleading with her to eat, thankfully. As scary as all of her new "stuff" is, I believe it will give her a better quality of life and lots more energy--so that is a good thing.
Yesterday, Sam tried a Kimba stroller and she really, really liked it. Sammy was off of her vent and the respiratory therapist busted us out of our unit and we took the elevator to the atrium downstairs. She was so excited to be free and was smiling, saying "Hi" and waving at EVERYONE. It was really sweet to see her so excited. Although Sam has been semi-mobile, I always suspected that if she needed a chair of some sort she would be fine with it. The kid loves to be pushed around. And, the Kimba allowed her to be higher up (and sitting up straighter) than her regular stroller. Hopefully we'll be able to get the insurance companies to agree that this type of stroller/wheelchair is what she needs. Although it is heavier than I would prefer, with all of her new equipment it needs to be. We can get it fitted with a vent tray, IV pole and o2 holder. I hope she doesn't need ALL of that stuff all the time. But we will need to take it with us "just in case", so it's good to have the ability to take it with us.
We are still paying attention to some things with Sam's labs, as she is still needing a bicarb supplement (which also doubles as a sodium supplement). But otherwise it's been a good week and we are grateful.
We love the weekends around here because Val gets to be here with us and nothing makes Samantha happier than having both of her mommies around, spoiling her with attention, hugs, and snuggles.
Until next time,
Monica
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